SARS-COV2 Pandemic Serosurvey in a Rare Disease Population Research
I’ve been asked to participate in an NIH research study titled above! Has anyone else? Here are some of the details. I’m to receive my kit next week.
You are being asked to take part in a research study at the National Institutes of Health (NIH).
IT IS YOUR CHOICE TO TAKE PART IN THE STUDY
This study is entirely voluntary, and you are not required to participate. If you join this study, you may change your mind and stop participating in the study at any time and for any reason. In either case, you will not lose any benefits to which you are otherwise entitled. If you do choose to leave the study, please inform the study team.
WHY IS THIS STUDY BEING DONE?
NIH is conducting this study to assist in grasping the impact of the newly emerged SARS-COV2 (COVID-19) virus as it is critical to gain a rapid understanding of exposure and immunity in the general population.
They want to identify if individuals with rare diseases were exposed to this virus in recent months, so we can further understand how those with rare diseases are affected.
They can investigate this by analyzing blood samples to see if we can detect antibodies to the SARS-COV2 (COVID-19) virus.
WHAT WILL HAPPEN DURING THE STUDY?
If you or your family member are less than 90 years old, have a rare disease and participated in the study “Impact of COVID-19 on People Living with Rare Disease and their Families” your participation will include:
· An over-the-phone consent.
· An electronic questionnaire (This will ask demographic and general health questions)
· One at-home blood collection. You will perform a finger prick on yourself or your child and then collect your own blood to send to us per our instruction. The collection will be less than ¼ of a teaspoon of blood.
Your sample will be stored for possible future research. If you do not wish for samples to be stored, you should not participate in this research study.